Measuring The Progress of Our Village

Nov. 10, 2018

It's important to measure progress. I wrote this more than three years ago as a blogger for the International Bipolar Foundation. My feelings are still the same but, thankfully, our village is ever-growing.


May 27, 2015

Parenting isn’t easy. Anyone who’s ever parented, or has even just been parented well knows that. Don’t they say, “It takes a village to raise a child”? As if to say raising children well takes more than just one person, it takes a community, right?

Let’s suppose, God forbid, that your child has been diagnosed with a very serious illness, such as diabetes or, dare I say it, cancer. My assumption is that the outpouring of support would be ample from the very start. From what I can tell, serious childhood illnesses like these are publicized and supported locally and nationally in many ways. There are 5K races, online campaigns, viral videos, fundraisers, and celebrity spokespersons offering their support to encourage donations and community involvement. And, of course, in our local communities, neighbors and friends seem to be willing and able to offer random daily kindnesses. They are bringing over lasagna, mowing the lawn, or caring for your other children when you take your sick child to the hospital. Yes, the entire village certainly seems to step in and help. And thank God, too. Because caring for a sick child is not only heart-wrenching, it is exhausting. Caring for a sick child can break you.

But now, let’s suppose, that your child has been diagnosed with a mental illness. What does the community do for you? How do they reach out and help?

(Crickets, the sound of crickets)

Childhood Cancers and other similar illnesses are tragic diagnoses, life-changing, and sometimes terminal. Parenting a child with such an illness requires on-going support. Parents need to be thoroughly informed, comforted and encouraged to stay strong through the challenges ahead.

But, have we forgotten, Childhood and Teen Mental Illnesses are tragic as well? Life-changing...and yes, sometimes even terminal. Parenting a child with such an illness requires on-going support. Parents need to be thoroughly informed, comforted and encouraged to stay strong through the challenges ahead.

Parenting isn’t easy. But when you are parenting a child with mental illness, the walls cave in. I know this first hand. And there are no neighbors offering lasagna at your doorstep. Because it is likely, you haven’t told anyone. Because who would you tell? What would people think? What would they say? And what could they possibly do to help? So, often times, it’s just you. And your child. With perhaps their siblings, frightened and alone.

I met a mother this week, a mother of a son who has schizoaffective disorder. Her son is exactly my son’s age. We traded stories and some tears over coffee. The onset of my son’s bipolar diagnosis paralleled her son’s situation in many ways, only her son’s illness is relatively new, while my son’s illness has been a part of our lives for five years now.

As I relayed our family’s story to her, the tension in her neck, the quiver in her voice, the furrow in her brows all seemed to lessen a bit. She kept saying, “How do you do it? How have you been so strong? I am not sure I can do this…”

But, clearly, she can do this. Because she took a step I didn’t take when I should have. She reached out for help. When my son first presented with his illness five years ago, my walls all caved in. I didn’t tell anyone. And there was definitely no lasagna, no one to share stories, coffee and tears with. But now, thankfully, the stigma of mental illness is finally breaking down a bit. This other mother and I met through a local mental health organization that put us in touch when she contacted them for help. I became involved with the organization about a year after my son’s spiral into serious illness, after he’d begun self-medicating out of denial and after he made life-altering decisions that ultimately led to his incarceration. She, however, became involved at the onset of her son’s diagnosis. So her son, thankfully, is now getting help...and so is she.

This is progress.

Our communities need to acknowledge that parenting children with serious conditions, whether they are illnesses of the pancreas, the blood, or the mind, need help.

We need a village of support to do this right. I hope to be part of that village, if only for this one mother. Because nobody should have to do this alone.

Original post titled as "Be the Village" on http://www.ibpf.org/blog/be-village

The Benefits of Re-Routing: Finding Hope When There Are No U-turns

June 3, 2018

A few weeks ago, I traveled out of state for work. After a full day of school presentations, I was tired and ready to get back home. Three hours away, on an unfamiliar highway in the mountains where cell service is spotty, my phone navigation lagged in a dead spot for just a moment and I missed my exit. 

Worst yet, there was no place to turn around. I had to drive 20 miles the wrong way before I could finally head back in the direction of home.

But on that road traveling the wrong way cursing emphatically, I was reminded that in life, we rarely get to turn around. Sometimes we have to go the wrong way for a long time before we get a chance to get back on the right road.

I haven't always known this. As a kid, I loved "do-overs". Whether it was a roll of dice, a hand of cards, or a final shot at the free throw line, if I didn't like the outcome the first time, as the big sister, I often declared the need to do it again. And my younger brother, always eager to please, would agree. I'd always get another chance: another roll, another hand, another shot at the basket.

In middle school, our family got our first computer. My brother and I were supposed to take turns - one complete game per person and then switch. The problem was, I rarely finished a whole game so he didn't get many chances to play. I would constantly find a reason to start over. Looking back now, my brother's patience was saint-like. I ought to give him a call and apologize.

As I grew older, my desire for a do-over when things didn't go my way continued. While rehearsing for piano recitals, I'd start over every time I flubbed a note. Eventually, I would get through the piece error-free, but the beginning of the song was always better than the rest of it.

I've done this a lot over the years, looking for the do-over so I can get a better outcome. Lots of staccato-moments, lots of beginnings, lots of starting, stumbling and seeking to start again. Parenting, though, doesn't offer do-overs. There's no time you can turn around and try again. You just have to keep going and hope there's another way to get where you're headed, hope for re-routing.

There have been plenty of times I would have loved to call "do over" when I'd flubbed as a mom. The little mistakes like when I let my son eat too much Easter candy before church and he vomited all over the crowded pews of parishioners. And the big mistakes, like the times, I promised I wouldn't tell anyone about my son's crisis, letting stigma keep him from getting help.

Knowing what I know now - that the impact of stigma can be devastating and that the lack of information and support can lead to the lack of hope - I would definitely do things differently. But, sadly, there are no U-turns in parenting. 

The good news is when our life roads get re-routed, we have new opportunities. My re-routing has allowed me to meet some other wayward travelers.

Recently, I gave a presentation and I included parts of our family's story. One of the participants followed me out to my car afterward and asked if I had a few minutes to talk. 

"Thank you for coming today and telling your story," he said, and his eyes cast down before adding, "I feel like you came here just for me." 

For privacy, I won't share the specifics about his loved one in crisis, but he said it was the first time he'd told anyone about it. He appeared visibly shaken, yet also somewhat relieved.

When I share my family's story in presentations or at meetings, people often seek me out later, privately, either that day or days, weeks, even months later to tell me their own story, relieved and grateful knowing there are others who've been through this too. Sometimes I say to them, "we're members of a club we never knew we joined -but we are in it together." 

These encounters are powerful. No matter how many times someone says, "Thank you for telling your story - I feel so much better because of ..." something washes over me. Their relief and their gratitude fill me up, temporarily quelling the guilt I still feel about my own son and what happened years ago. Often, they conclude by saying something like this, "Just know that you helped someone today."

This isn't about my story, though. And you don't have to have a blog or change careers to make a positive impact on someone else. Each of us traveling, whether by broken GPS or not, has the power to help other lost travelers simply by sharing our story. It's not complicated and it doesn't require special training. It might be hard at first but it's worth it. By sharing our stories with other solo travelers, our own roads become less lonely.

I've met amazing people and learned so much on this re-routed journey so far. My road has even intersected with my older son's. Sometimes, I have the chance to travel with him briefly sharing a leg of our journeys together before our roads diverge again.

But I'll keep going this way - allowing the GPS to reroute me, trusting that the highway I'm traveling is the right one for me. And hopefully, at some point up ahead, at an intersection I can't yet see, my road will merge with my son's again and we can travel the rest of it together.

Requiem for a Turkey

Nov. 22, 2017

Seven years ago, as Thanksgiving loomed, my household was slowly unraveling. I was a single mother with two teenage sons, one of whom was experiencing the onset of serious mental illness. We had not shared with our friends and family anything about his condition. We hadn't really acknowledged it yet ourselves. In fact, my sons' father was unwilling to discuss it with me at all, citing only typical teen angst and a mother's over-reaction. And, as far as I could tell, my younger son was well-distracted by video games, 13-year-old girls, and new pimples. I had hoped he had not noticed the gradual disintegration of our home.

Only my immediate family knew that my 18-year-old son was seeking mental health treatment and that he'd been diagnosed with depression. That was the extent of it, and most people didn't even know that.

I was denying the obvious, determined that silent resolve was my only option.

And, because I usually hosted my parents for Thanksgiving, I first thought I'd just put on my game face and power through it. Only a few times a year I attempt a Martha-Stewart-Style meal, so I figured I needed to suck it up. But as we reached mid-November, it became clear that I was not cooking a turkey this year.

I remember agonizing over how to tell my parents I wasn't hosting Thanksgiving Dinner. At no point did I recognize that what I really feared sharing was far more intense than the thought of thawing and stuffing a 12-pound Butterball.

Instead, I convinced them (and myself) that I wanted to do something for others on Thanksgiving rather than host the traditional, gluttonous holiday meal. I expressed disdain for our society's disgusting obsession with the "wrong" message, even dipping my toe into the Pilgrims-Natives historical perspective and claiming revenge for our American Indian ancestors.

Frankly, I was off the rails with rejection about hosting a classic Thanksgiving. I researched local organizations that offered service opportunities for the day and opted for Meals on Wheels. Under the veil of social consciousness, I pitched the idea to my parents.

They weren't thrilled, but they agreed. My mom offered to help me make plans to "give back" for Thanksgiving. Funny, I don't even remember telling my sons about this. I suppose it didn't rile them one way or another or I'd remember, right? In hindsight, my suspicions are that my older son was so deep in the throes of his illness by then that he wasn't able to care, and my younger son was so traumatized by the daily uncertainty of his family life, that he wasn't able to care either.

My only recollection is that I stressed out about telling my parents that I wasn't cooking a turkey.

As all the planning for holiday humanitarianism was playing out, the symptoms of my son's illness were becoming more obvious and harder to ignore. Yet, somehow, I did just that. His volatile moods had become an expectation rather than a surprise. His swings between angry accusations and weepy apologies were now the norm.

Each day, driving home from the school where I taught and where my younger son attended, we avoided discussions about his older brother. He didn't ask any questions and I didn't offer any answers. It was as if we had made an unspoken pact of distraction and denial. Instead, we silently savored the steady, predictable hum of the engine as we traveled the 25-minute commute back home, never acknowledging the reality and unpredictability of what may be waiting for us there.

Thanksgiving Day went off without a hitch at first. We used two cars between the five of us and distributed hot meals to grateful individuals living in seclusion for various reasons. Some were elderly, some ill. All of them were alone and deeply appreciative of our offering.

I remember thinking, "This is really good for the boys to experience. I'm so glad we're doing this. They need to see what outreach looks like. They need to be involved in caring for those in need of support, those who really need help."

I never once realized that we, too, fit in that category.

Once we'd delivered all the dinners, it was time for us to seek out our own hot meal. I had imagined we'd go to a Chinese restaurant. In my mind, that would be the perfect outright objection to the holiday nonsense that I'd claimed had inspired me to skip all turkey prep this year.

We piled into one car and began our search for the perfect Anti-Thanksgiving respite. The Chinese restaurants that I had in mind were all - surprisingly - closed.

Somehow in my planning, I'd failed to actually call them to check. I had believed completely in my fantasy that our local Chinese restaurant owners would ignore their new home country's holiday and remain open to serve revolutionary families like ours.

So we drove up and down the highway in search of a restaurant that was open. My sons were hungry and so was my dad. I bit my nails nervously, scanning both sides of the street for someplace with lights on. The first time we circled, my dad had spotted a diner serving a "Traditional Turkey Meal". I immediately opposed the idea - citing my determination to rebel this year. As we made our second and third pass by Said Diner, the growling from my companions grew louder.

I finally relented.

We slid into a booth at our neighborhood diner less than one mile from my house. And, despite my strong objection, most of our party of five chose from the menu the Traditional Turkey Meal.

There's a lot to give thanks for these days, seven years later: my sons, my parents, my husband of three years. But, I really can't get into that right now.

I've got a turkey to cook.

Caregivers: Two for One Special!

May 28, 2015

This post is actually an invitation for you to check out two other posts I have written recently, both on the subject of caregiving for a loved one with mental illness.

The first article is called "Be the Village" and it's posted on International Bipolar Foundation's website.

LINK: International Bipolar Foundation post "Be the Village"

The second is an article for Amy White's blog called "Far From Paradise."

LINK: Far From Paradise post "No More Excuses"

A Documentary about Mental Illness and Its Stigma

May 11, 2015

In June 2013, my younger son and I were interviewed by a documentary film maker who was traveling the globe for his project about mental illness and its stigma. Here is the link to the original post from my blog.

We were honored to be involved in this powerful film with such an important message. The film is now finished. I hope you'll take a peek at the film. The director, Tim Hill, plans to submit it to film festivals later this year, but hopefully, you'll help us share it via the internet as well.

Choices

November 29, 2014

My younger son is applying to colleges and the deadlines are looming. The choices about where to visit, what questions to ask, and when to hit “send” are overwhelming. To help him with this arduous process, I offered to proofread his application essay.

The prompt was about identifying an event in his life that triggered his transition from childhood to adulthood. He chose to write about his older brother’s incarceration.

He was not eager to share it with me, assuming that the subject matter would be too difficult for me to handle.  He knows me well. I considered it for a moment. Would I finally be able to get a glimpse inside the iron fortress of my younger son’s mind? The emotional wall he has built over the last few years has grown tall and wide, but in this moment he offered me the lone key to the only door. I chose to step inside.

I took the essay and began to read. In doing so, I learned a few valuable lessons.

First, I realized that I am stronger than I thought. Not only was I able to read this moving account of his fallen hero and how he consequently discovered himself, I was able to compartmentalize my own emotions in order to help draw out his insightful viewpoint about that difficult time. I listened for his unique voice through the din of my own muddied memories, and I helped him shape his thoughts into a well-crafted piece about his personal journey of becoming a man.

Secondly, I remembered that we do not live in a vacuum. The choices we make do not only affect us, they affect those we care about, those we hold dear. And, because of those first choices, more choices must be made.  It is a ripple effect. Four years ago, my older son made the choice to ignore his bipolar disorder diagnosis. Eventually, he paid the price: he is now a convicted felon. My younger son, who is guilty only of being born into a household affected by mental illness, has faced difficult choices too. He could have easily played the victim. He could have allowed his brother’s illness and incarceration to destroy him too. Instead, though, he has made the choice to embrace the challenges in life as opportunities to become a better person every day. His brother’s choices have affected him, but he has chosen to use them for good.

Lastly, I discovered that my younger son is going to be okay. I see now that he is healing. While internalizing his feelings was his natural coping mechanism, in his own way, he has dealt with them too. He has sorted through his disappointment, his anger, and his despair and he has resolved to thrive despite them.

Sentenced With a Side of Stigma

May 23, 2014

Today my son was sentenced to 3 years in a level 5 facility for crimes he committed in March of 2013. Because he has been incarcerated since his arrest last March, he only has 2 years more to serve. The sentence he received was the mandatory minimum sentence so for that we are grateful. We are also hopeful that with time off for good behavior and with completing a court-ordered treatment program while in prison, he may be released earlier than scheduled.

So the sentencing is over. Now we know what to expect; we have a clearer picture of the future. But something else happened today in court that has me troubled. Actually, the more I think about it, the more it bothers me.

There is something in my state called Mental Health Court. This has different implications depending on the severity of the crimes committed. In my son's case, Mental Health Court would allow him to have a probation officer who has mental health training once he is released and put on probation. Today our attorney asked the judge to consider this as part of my son's sentence, citing the volumes of documentation he has of my son's mental illness history. The judge denied his request.

But that isn't what bothers me. What bothers me are the words that he used while denying this request.

The judge said instead of Mental Health Court, he thinks my son should "just do it himself."

Do what exactly, your honor? Do you mean he should manage his neverending waves of mania and depression alone?  Isn't that what landed him here in the first place?

While I would have liked to see my son assigned to Mental Health Court for his probation, I am not really angry about that decision. I don't understand it, but that's not what upsets me. No, what upsets me is that a person in such an important position of power, a well-educated, seasoned professional --a judge-- could be so ill-informed about mental illness that he thinks it is something one can simply self-regulate.

And to think, May is National Mental Health Awareness Month. Perhaps he missed the memo.

This experience is just one more in a long list of ways that the stigma of mental illness has affected our lives. The stigma kept us from revealing our crises and seeking help in the first place. Now it has surfaced once again, in what I hope is the last chapter of this hellish story.

"Black Box" is a Black Hole for Bipolar

April 26, 2014

ABC attempted to do what no other network television show has been able to do: depict bipolar disorder realistically and openly. Unfortunately, ABC failed miserably with "Black Box" which debuted this week.

If you want to see bipolar illness portrayed in a classically cliched way, act fast. This show won't last long unless the writers wake up and smell the stereotype. "Black Box" follows Dr. Catherine Black who specializes in rare brain disorders. The audience "sees" these illnesses through her eyes as she diagnoses and treats the patients affected by them. But Dr. Black has her own secret. The "clever twist"...wait for it... is that she has bipolar disorder. 

In the pilot episode, we learn that Dr. Black has been dating Will for a year. He wants to marry her but she is afraid to commit and it isn't long before we learn why: she hasn't told him about her bipolar diagnosis. Not only does Dr. Black perpetuate the stigma of mental illness by keeping this secret, as a medical professional who specializes in brain disorders, she certainly should know better. Do know harm? I think not. What does this say about how society views mental illness still today? While I can understand if the writers are planning for Catherine Black to recognize over time that her illness isn't something to hide, the way the plot of the first episode unfolds suggests a terrible misunderstanding about how bipolar illness actually affects people.

In the pilot, Dr. Black decides to go off her medication one day and within a few hours she is in the midst of what seems to be a full blown psychotic episode. During this "psychosis" Dr. Black dances erotically to music no one else hears, she stumbles through the city streets mumbling to herself and climbing lamp posts, and she instigates a fight with a complete stranger. While any one of these events could possibly happen to someone in a manic phase of bipolar, none of them could happen within hours of ending medication. I don't know who to blame for this stereotyped portrayal of someone "crazy" but it's a shame. Finally, a show comes along that appears to offer a wide-eyed view of what bipolar looks and feels like, and instead it continues the on-going misunderstandings society has of this very treatable illness.

Those of us who understand mental illness know that people who have bipolar are not defined by it, so why paint Catherine Black as just one dimensional? Despite her apparent brilliance and obvious beauty, she is simply a crude caricature of what society believes mental illness to be. Why not take a lesson from Silver Linings Playbook? Bipolar illness isn't a one size fits all disorder. Bradley Cooper's portrayal of Pat Solatano offered a more nuanced view of what bipolar can look like. He was real. He had depth. Couldn't Catherine Black have layers too? 

While ABC may have made the first network television attempt at ending the stigma of mental illness, it may be doing more harm than good. In true Stillhopeful mom fashion, I plan on giving this show another chance. Maybe it can redeem itself before it loses every last viewer.